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GERRY BROPHY Training in Care Solutions 2015 ' Assessing people with dementia and their carers in line with the guiding principles of the Care Act and the key principles of the Mental Capacity Act ' Personhood and positive person work in the context of crisis intervention ' Understanding challenging behaviour in the context of communication difficulties and relationship aspects of dementia ' Risk enablement in working with people with dementia and their carers ' Positive and negative interactions with a person with dementia in crisis ' Empowering and involving the person with dementia and their carers ' Using the 'ABC' approach in understanding challenging behaviour ' Crisis care planning in the context of person-centered care What do we know about Dementia Training in Care Solutions 2015 PreDiagnoses Diagnoses Living with Dementia End of Life and after death People with dementia are firstly people like you and me. Training is a block to stand on and build from, but it cannot stand alone. Extra care can provide the support that people with dementia need without the institutionalisation of care homes; it can be the ideal environment to take someone through the varying stages of dementia whilst remaining in their own home and retaining their independence for as long as possible. Dementia is a triad of problems: memory loss, decline in some other aspect of cognition, and difficulties with activities of daily living. More formally, dementia is defined as a syndrome (that is, a distinct pattern of symptoms and signs) that can be caused by many brain disorders, most of which progress gradually over several years. Symptoms have usually been present for at least 6 months, and activities of daily living are impaired by the decline in memory and thinking. Will become end of life care situation. There are currently more than 700,000 people with dementia in the UK. There are currently 15,000 younger people with dementia in the UK. There are over 11,500 people with dementia from black and minority ethnic groups in the UK. There will be over a million people with dementia by 2025. One third of people over 95 have dementia. 64% of people living in care homes have a form of dementia. One third of people over 95 have dementia 60,000 deaths a year are directly attributable to dementia One in three people over 65 will die with dementia 1 in 100 people aged 65-69 have dementia 1 in 25 people aged 70-79 have dementia I in 6 people aged 80 and over have dementia 1 in 14 people over 65 have dementia Only forty per cent of people with dementia receive a formal diagnosis Providing effective support in the community to reduce the time a person with dementia spends on a hospital ward by one week could save at least £80 million a year. Up to 150,000 people with dementia in the UK are being inappropriately prescribed antipsychotic drugs and these are contributing to 1,800 deaths a year. Alzheimer's Vascular Lewy Body Fronto-temporal Korsakoff’s Creutzfeldt-Jakob disease, (prion disease) Down’s Syndrome and Huntington's Aids related cognitive impairment Vascular dementia is a type of dementia caused by problems in the supply of blood to the brain. If the vascular system within the brain becomes damaged and blood cannot reach the brain cells, the cells will eventually die. This can lead to the onset of vascular dementia. There are a number of conditions that can cause or increase damage to the vascular system. These include high blood pressure, heart problems, high cholesterol and diabetes. problems concentrating and communicating depression accompanying the dementia symptoms of stroke, such as physical weakness or paralysis memory problems (although this may not be the first symptom) a 'stepped' progression, with symptoms remaining at a constant level and then suddenly deteriorating epileptic seizures periods of acute confusion. hallucinations (seeing things that do not exist) delusions (believing things that are not true) walking about and getting lost physical or verbal aggression restlessness incontinence. It is more likely to affect younger people specifically those under the age of 65 - and it is slightly more common in men. lack insight, and lose the ability to empathise with others. This can make them appear selfish and unfeeling become extrovert when they were previously introverted, or withdrawn when they were previously outgoing behave inappropriately - for example, making tactless comments, joking at the 'wrong' moments, or being rude. lose their inhibitions - for example, exhibiting sexual behaviour in public become aggressive be easily distracted develop routines - for example, compulsive rituals. Cortical - Disorder affecting the cortex, the outer portion or layers of the brain. Alzheimer’s and CreutzfeldtJakob are two forms of cortical dementia Memory and language difficulties(Aphasia) most pronounced symptoms. Aphasia is the inability to recall words and understand common language. Sub-cortical - Dysfunction in parts of the brain that are beneath the cortex. Memory loss & language difficulties not present or less severe than cortical. Huntington’s disease and AIDS dementia complex. Changes in their personality and attention span. Thinking slows down. Focus Training Anglia Ltd 2008 Training in Care Solutions The brain is made up of billions of neurons, or nerve cells. These are the electrically charged units that, as they communicate with each other, organize electrical energy to make the brain work. Loss of Memory Aphasia Apraxia - (decreased ability to perform physical tasks such as dressing, eating, ADL’s Delusions Inability to learn new tasks Loss of judgment and reason Loss of inhibitions and belligerence Social Withdrawal Visual hallucinations Easily lost and confused Early Stage Middle Stage Late Stage Training in Care Solutions forget about recent conversations or events repeat themselves become slower at grasping new ideas, or lose the thread of what is being said sometimes become confused show poor judgement, or find it harder to make decisions lose interest in other people or activities develop a readiness to blame others for taking mislaid items become unwilling to try out new things or adapt to change. Training in Care Solutions Characteristics Poor personal hygiene Need assistance with ADLs Disturbed sleep Unable to remember names Loss of short-term recall May display anxious, agitated, delusional, or obsessive behavior May be physically or verbally aggressive Inability to carry on a conversation May use “word salad” (sentence fragments) Posture may be altered Disoriented to time and place May ask questions repeatedly Characteristics Loss of verbal articulation Loss of ambulation Bowel and bladder incontinence Extended sleep patterns Unresponsive to most stimuli Interventions Caring for physical needs Maintain integrity of the skin Medical interventions Most activities are inaccessible Training in Care Solutions 2015 I believe that people with dementia can make a choice, be it an oral answer, a nod or shake of the head, or perhaps moving a part of their body such as a finger. The trick is to get to know how they best communicate and go down that line. James McKillop (Scottish Dementia Working Group) We need professionals to work with us, not exclude us and realise we are often the key to understanding the person with dementia Uniting Carers, Dementia UK Personhood : A standing or a status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition and trust. Kitwood (1997) Dementia Reconsidered: the person comes first Intimidation Withholding Outpacing Infantilization Labelling Disparagement Accusation Treachery Invalidation Disempowerment Imposition Disruption Objectification Stigmatization Ignoring Banishment Mockery Warmth Holding Relaxed pace Respect Acceptance Celebration Acknowledgement Genuineness Validation Empowerment Facilitation Enabling Collaboration Recognition Including Belonging Fun Person with Dementia Practitioner Family Members/ Friends “Person centred care is founded on the ethic that all human beings are of absolute value and worthy of respect, no matter their disability, and on a conviction that people with dementia can live fulfilling lives.” Improved quality of life for the those with dementia can be acquired when people are involved in social activities and encouraged to become engaged in their past pleasures. Also person centred care can help in sustaining a good relationship between the carer and the person affected by dementia, which in turn can maintain the care recipient’s high level of psychological well-being and productive behaviours and reduce depression. Less agitation. Studies have shown that decreased agitation can be obtained in person centred care programs if we respect the client’s freedom of choice regarding daily activities scheduling. This can lead to decreased verbal agitation levels and also care workers feeling less rushed and more tolerant to clients’ behaviours. Improved self-esteem. Research indicates that when people with dementia are being provided with the opportunity of expressing themselves and their needs, they will maintain a positive sense of self. This can significantly reduce their feelings of grief, anxiety, anger and feeling like a burden to others. Better sleep patterns. Respecting past interests and current capabilities can improve sleep during the night and daytime napping, as shown in person centred care research programs. Training in Care Solutions 2015 Gather relevant information about the person’s past, likes, dislikes, and incorporate these into the care giving. Facilitate reminiscence with appropriate stimuli. Take into consideration and acknowledge the importance of the individual’s own interpretation of their subjective reality. Be ensured that no task or aspect of care is placed higher than the subjective experience of the individual. Make all routines and activities flexible for the person with dementia, that they can be easily adapted according to individual’s wishes Understanding the reasons behind challenging behaviour in the elderly and how to better cope, manage and care for these behaviours Training in Care Solutions 2015 In groups come up with a definition of challenging behaviour Training in Care Solutions 2015 “severely challenging behaviour refers to behaviour of such intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or delay access to and use of ordinary community facilities.” or Difficult or problematic behaviour, the frequency and intensity of these behaviours can vary greatly with each individual. Training in Care Solutions 2015 Widely accepted that most challenging behaviour in dementia is an attempt at communicating ‘unmet needs’ Kitwood (1997) – “…well being will only be attained when we address meaningfully the needs of those with dementia…” Stokes (2001) – “ we must attend to the psychological needs of people with dementia if we want to improve their well being” Training in Care Solutions 2015 When a person has dementia one or more areas of the brain are damaged with the areas of damage different for each person. THEY ARE STILL INDIVIDUALS The person cannot help their behaviour resulting from this brain damage. People with dementia do not have the ability to manipulate or use their behaviour purposefully due to this damage Training in Care Solutions 2015 The Behavioural and Psychological Symptoms of Dementia (BPSD) are defined by the International Psycho geriatric Association (IPA) as: Behaviour symptoms include: 1:aggression, screaming, physical 2:agitation, restlessness, 3:Purposeful Walking 4:Culturally inappropriate behaviours, sexual disinhibition, hoarding, cursing & shadowing. Psychological symptoms include: Anxiety, depressed mood, hallucinations & delusions Training in Care Solutions 2015 Defensive behaviour – reaction to a perceived threat or invasion of personal space INTIMATE CARE CAN BE A FRIGHTENING EXPERIENCE Reality Confrontation – exposing a confused person to the upsetting reality that they are unwell and in hospital can distress them, explaining that a loved one has passed away will just make them relive the painful memory over again Alarm – abrupt or sudden approaches to a person who is poorly sighted/hard of hearing as well as confused, especially if from behind or involving unexpected physical contact. Training in Care Solutions 2015 Goal Frustration – staff attempting to restrict or control the wishes and choices of the person. Giving instructions to STOP IT or act differently may provoke an aggressive response Psychosis – aggression may be linked to delusions – fixed false beliefs which cannot be reasoned with e.g.) that the neighbours are trying to kill them or poison them: However it is important to remember that delusions may also be misperceptions of their environment or the situation in hand…. which can lead to an aggressive incident Training in Care Solutions 2015 AGITATION can be further defined: Aggressive behaviour – Physical and verbal Physical non – aggressive behaviour – pacing, restlessness and walking with purpose Verbal agitated behaviour – screaming and repeated requests for attention (Cohen – Mansfield & Billig 1986) Training in Care Solutions 2015 can be further categorised into: Exit seeking behaviour – repeatedly attempting to leave the home Modellers – shadowing or following other patients or staff members Self stimulators – these patients are bored or under stimulated and may pace or walk around the home or unit Akathisiacs – these patients are restless as a side effect of certain medications (Lawlor 1995) Training in Care Solutions 2015 The behaviour should not just be considered as confusion or agitation Behaviour is usually a form of communication and often represents an unmet need Care givers cannot change the behaviour of the person with dementia, however, they can change their own behaviour and the working environment Training in Care Solutions 2015 PHYSICAL ENVIRONMENTAL COMMUNICATION PSYCHOLOGICAL Training in Care Solutions 2015 Physical medically unwell (especially delirium) impaired vision / hearing medication effects fatigue pain constipation Note: due to communication difficulties acute health issues can be difficult to identify Training in Care Solutions 2015 Environmental New/change in environment Over/under stimulating Lack of orientation cues Lighting - dim/glare Too restrictive - no place to walk, restraint Temperature - too hot/cold Training in Care Solutions 2015 Communication difficulties Client is unable to communicate needs has communication problem (e.g.; due to CVA) has sensory deficit (hearing, sight) Training in Care Solutions 2015 Communication difficulties Communication is too complicated Communication is too confronting Lack of communication - not explaining things properly to the person Training in Care Solutions 2015 7% 38% Training in Care Solutions 2015 55% Body Language Tone of voice Words Remember, people with dementia will reflect the mood behaviour of others. When caring for a person with dementia who is having difficulty communicating, remember they will pick up on negative body language such as sighs & raised eyebrows. Training in Care Solutions 2015 PSYCHOLOGICAL: We all need to feel psychologically safe. People with dementia feel they are in a world devoid of familiarity or reassurance = feeling unsafe, uncertain, frightened. FEAR and FRUSTRATION is one of the main causes of BPSD; derived from not knowing where they are, why they are there, not recognising faces around them = distress and wanting to go home Training in Care Solutions 2015 PSYCHOLOGICAL: To be engaged in occupation and have stimulation is fundamental to psychological well being. Over – stimulation - can be typical in the acute care setting. Under stimulation – INACTIVITY.. The usual activity in hospital is doing nothing or sleeping, yet when they try to do something WE STOP THEM. Training in Care Solutions 2015 PSYCHOLOGICAL: Social and human contact: Social contact is crucial to well being and has a protective effect against psychological distress, BUT isolation can be the norm for people with dementia! Isolation can lead to them calling out or follow others around them Eye contact, a smile, a hand held, sitting with the person can often help to meet this need Training in Care Solutions 2015 Behaviour that is misunderstood and managed inappropriately may escalate. Think A B C A = Activating Event (what was the trigger) B = Behaviour (what behaviour resulted) C = Consequence What was the consequence Training in Care Solutions 2015 Scenario 1 Joe is 75 and suffers from Behavioural and Psychological Symptoms of Dementia. His aimless wandering is perceived as intrusiveness. When confronted he becomes aggressive. A= Activating event - Joe wanders into co-patients room. Co-patient orders Joe out. E= Escalation Joes aggression escalates from verbal to physical. B= Behaviour - Joe responds with verbal aggression. C= Consequence Joe is removed from the room in a firm and decisive manner. Joe becomes physically aggressive to staff. C then leads to A. staff intervention becomes the activating event, which escalates the aggressive behaviour (B), leading to restraint (C). Restraint continues to escalate the behaviour and so on. Training in Care Solutions 2015 Scenario 2 Joe is 75 and suffers from Behavioural and Psychological Symptoms of Dementia. His aimless wandering is perceived as intrusiveness. When confronted he becomes aggressive. A= Activating event - Joe wanders into co-patients room. Co-patient orders Joe out. D= De-escalate & Debrief - Joes aggression de-escalates & staff & others undergo debriefing. B= Behaviour - Joe responds with verbal aggression. C= Consequence - staff assess the situation and talk to Joe in a warm and friendly manner that is respectful and maintains dignity. Staff use communication techniques aimed at diffusing the aggressive situation. By not confronting Joe in his anger & by using appropriate communication techniques, the (C) moves to (D) rather than (A), allowing staff to distract him with an activity rather than an (A) activating event. The circle is broken. Training in Care Solutions 2015 Don’t be confrontational Don’t show fear, alarm or anxiety, as this may encourage the agitation/aggression by demonstrating that it is not they who are unable to cope, but you as well Don’t try to lead the person away or initiate any other form of physical contact, such actions can be easily misunderstood Don’t corner them as this will heighten feelings of threat and alarm Training in Care Solutions 2015 Don’t attempt to approach from behind Don’t crowd them by calling for assistance Don’t blame tease or ridicule Don’t attempt to use restraint unless absolutely necessary Don’t raise your voice Training in Care Solutions 2015 Stay calm, this will demonstrate that you are in control. Respect their personal space – this also helps to reduce threat and enables staff to maintain a safe distance Stand at an angle of 45 degrees Use tone of voice to convey reassurance Acknowledge how they are feeling – try to identify what the problem is Listen to what they actually say – be accepting not rejecting Do not disagree with what they believe to be true to them Seek points of similarity rather then difference Use multi – step re direction: Training in Care Solutions 2015 1. 2. 3. 4. Validate the apparent emotional state of the person. E.g.: “You look worried/concerned/upset” This may help to establish a rapport. Next the carer should join in with the persons behaviour where possible. e.g.: “You’re looking for something/someone? I’m trying to find something too, lets look together” Once this common goal is established distraction can be easier. e.g.: “this is thirsty work, should we get a cup of tea?” Finally redirecting the person away from their original goal has been established. e.g.: “lets sit down and have that cup of tea?” Training in Care Solutions 2015 REMEMBER: BEHAVIOUR IS COMMUNICATING Enter their world: The key to solving confusion is to help people with dementia feel safe and listened to, and find something familiar for them to anchor to. Reassure and acknowledge what they are expressing – even if it is about their past. Help them to name what they are feeling Training in Care Solutions 2015 Validate their feelings - when you find out what is confusing from their point of view Reminisce – switch them from asking about people from their past to reminiscing about them instead. Anchor them - direct them to something familiar: a routine, a song, a touch, a favourite activity. If over stimulated – simplify the situation by eliminating distractions and slowing down the pace of the environment. Training in Care Solutions 2015 You know what makes me feel safe, secure, and happy? A smile. Did you ever conside this? When you get tense and uptight it makes me feel tense and uptight. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around. Please try to understand and remember it is my short term memory, my right now memory, that is gone -- don't talk so fast, or use so many words. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of castor oil. So I'll just say No to be safe. Slow down. And don't sneak up on me and start talking. Did I tell you I like smiles? Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don't have my attention, or confuse me? I am going to say No - count on it. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nicesmile always gets my attention. Did I mention that before? Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don't come back and tell me you are sorry, I won't know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think. You talk too much -- instead try taking my hand and leading the way. I need a guide not a person to nag me all the time. The person with dementia cannot always perceive our “reality” due to the damaged areas of the brain What the person remembers from the past has largely become his present Things from the past are familiar and comforting to discuss, remember and do – connecting with the past is a way of reassuring safety and familiarity in a confusing world It is important to respect the persons memory without correcting – ie believing a parent is still alive..correcting can re – traumatize the person by reminding them of a past traumatic event. The correction will probably be forgotten in a few moments and so makes it a futile exercise for both caregiver and the person Confusion can also result from forgetting steps in doing a task, feeling overwhelmed by the number of things going on in the environment, or simple inability to recognize anything as familiar. Training in Care Solutions 2015 Characterise the behaviour precisely with special attention to the circumstances under which it occurs. Was it gradual or sudden. If it appears inappropriate to us, consider whether the patient has an underlying goal or if they are misperceiving their environment or the situation Review the patients past psychiatric history, social history and premorbid personality. Review the medication list Be vigilant of the ongoing progression of the patients dementia and the potential change in symptoms Examine the patient with attention to changes in mental status from baseline. Look for signs of painful/uncomfortable physical conditions Training in Care Solutions 2015 Assessments : Need Risk Capacity Training in Care Solutions 2015
